Why are urologists dismissive about Decipher?

Posted by topf @topf, Apr 25 6:31pm

I have talked to four urologists. All four told me that the Decipher score does not change their assessment. On the other hand, the oncologist and the three radiologists I talked to all stressed it. Why is it perceived so differently?

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My urologist - a surgeon - ordered the Decipher (0.56) and he went over that and my biopsy results at the same appointment. I didn't request the Decipher and had never even heard of it prior to that appointment. I don't recall any of the several surgeons (or ROs) I've seen locally, at MD Anderson, or the Cleveland Clinic being overtly dismissive of the Decipher test, but they all tended to focus more on my age (50), Gleason grade 7 (3+4, 6/12 cores), existing urinary issues, and negative PSMA scan when discussing treatment options.

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@matthewdore

69 years old at diagnosis. PSA 4.6, MRI showed no lesions, Biopsy produced 2/12 cores at up to 30% Gleason 3+4 (3 other cores had some abnormal cells that could not be confirmed as cancer). Per their protocol, the urology clinic automatically sent a sample to Decipher.

My urologist presented three choices: Active Surveillance, Surgery, or Radiation. We discussed the options and settled on AS. Then…

The Decipher results came back at 0.84. We agreed AS was no longer a reasonable option. I was sent for a PSMA-PET scan which indicated the cancer was confined to the prostate.

The urologist offered to set up interviews with both an RO and a surgeon. I had already done some homework regarding these options and was leaning toward radiation, so I met with the RO. Between the RO and the oncology nurse, we had a very productive 2.5 hour meeting (my wife was present for most of it). The decision was to do 28 sessions of VMAT which was later increased to 39 sessions after my mapping session was completed. Fiducials and SpaceOAR were inserted prior to the start of treatment. No ADT.

It has been almost 2 years since the treatments were completed and my PSA has dropped with every test (latest = 0.26). The RO has declared me to be in remission and told me I was one of their “success stories”. As for side effects, they were minimal during treatment. I had ED for 20 years prior to my diagnosis and that became a bigger challenge post-treatment, but the combination of Trimix and a VED has made me a “new man”. There have been no other significant post-treatment side effects.

I am living a normal and active life. I feel great and grateful.

As an aside, I have a friend who was also diagnosed 3+4 about the same time. He opted for HIFU which failed. A year later he opted for IMRT (without a rectal barrier) plus ADT which appears to have taken care of the cancer, but left him with rectal burns. No fun.

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A 50s friend had Decipher after Gleason 10 that confirmed having RP. I had Gleason 7 but PET indicated node positive, so no need to guess treatment options. At 73, I chose ADT and radiation.

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My husband, who is 80) had a rise in psa from 2.4 to 4.4 to 6.4 which lead our GP seding him to a Urologist who prescribed a special MRI which was (unexpectedly for us) showed a very high probably of cancer throughout the prostate and thru the capsule. That was followed by biopsy which showed Grade 5 Gleason, Stage 4 advanced prostate cancer. The Urologist spoke with us and ruled out surgery and ordered radiation. When the radiologist saw the results of the MRI and biopsy he ordered the Decipher which was .99. He immediately brought in another member of the team - the oncologist who took over my husbands care (all three work closely together at the Jellison Cancer Institute in Sarasota). He sees the oncologist every three months. She has prescribed Abiraterone (1000 mg) and Prednisone (5mg) daily. We also see the urologist every three months who give a dose of Lupron Depot. Per the oncologist, my husband can only take the abiraterone/prednisone until Jan. 2026. He will also stop Lupron Depot. Then the oncologist will follow up with him for psa tests. My husband has decided regardless of what happens he has chosen to not have any further treatment. The three doctors work together all of the time and are a great team as is our Jellison Institute. And for us right now, we just want to enjoy whatever we can!

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I don’t see you mention that he got radiation. That would be really important with this case if he got radiation and the drugs . Hopefully you are getting PSA tests every 3 months along with The Lupron. What’s the most recent PSA test you’ve had and what were the results after the Radiation and drugs?

If he’s having a lot of fatigue problems with abiraterone Increasing the prednisone helps a lot. Or other side effects really causing him problems, If you bring it up, we may be able to help. Be aware that exercise is critical when it comes to managing the fatigue. Just walking a couple miles a day can make a major difference into fatigue and depression due to taking the drugs.

A Gleason score consists of two numbers, In your case, one of them is a five and I assume the other ones either four or a five. That would require him to be on ADT for 18 to 24 months, But you don’t mention when he actually started so it’s hard to tell how long he will be on it.

After he’s done with Lupron and abiraterone There is a drug he could take that would have very few side effects. That would really keep the cancer under control. I know a lot of people on that drug, including me. It is Nubeqa (Darolutamide). Sometimes the doctor will give you Xtandi (Enzalutamide) Which has a lot more side effects, So be aware of the fact that there is a drug he could continue with.

My father died of prostate cancer at 88. The level of pain he was in at the end was So bad that he was unable to communicate because of the drugs to manage the pain. He had all of his Molars ground down and crowned without Novacaine when I was young, end stage cancer was too much.

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@brian5837

In my case, the R/O recommended Orgovyx for my intermediate unfavorable prostate cancer prior to starting radiation. I went into that meeting determined to resist hormone treatment at all costs. He said, "I've never had a man sit there and tell me he wanted hormone treatment." So he offered the Decipher test, as it would show whether or not I needed hormone treatment. I agreed, and Decipher came back High Risk, so I started the Orgovyx and am glad I did. I credit the R/O for getting me over my initial objections and I credit Decipher for confirming in writing that I needed the hormone treatment. That' s my story.

Jump to this post

I have read many comments in this forum that if a Decipher score is high, then ADT may be necessary. I didn't doubt, I took it for granted that this is correct.
But because the discussion topic is "why are urologists dismissive about decipher," I decided to check if a possible reason can be that there is an alternative or equivalent test?
It is therefore only by chance that I found out: Decipher can guide a decision if adjuvant radiotherapy is necessary, as an addition to a primary treatment like surgery.
Conversely, Prolaris and Oncotype DX both predict the risk of biochemical recurrence; the latter can help determine whether hormone therapy is beneficial.
I was somewhat unhappy that my care team didn't order a Decipher test before advising me to go SBRT + ADT/Orgovyx. Not anymore because it wouldn't have been a factor in the hormone therapy decision; Oncotype DX would.

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